In recent years, the role of patients in biomedical research, including biobanking, has evolved from passive participants to active collaborators. This shift toward meaningful patient engagement brings significant benefits to the relevance, quality, and ethical grounding of research. But what does “patient engagement” really mean in practice? And how can biobanking professionals and researchers successfully apply it in their projects?
These were the topics of our ELSI dialogue “Empowering Voices: Enhancing Patient Engagement in Oncology Research – Experiences, Challenges, and Pathways to Inclusion”, which is part of the canSERV project. Watch the recording here:
Understanding Levels of Engagement
Patient engagement is not a single fixed concept—it is a spectrum of participation levels, each serving different purposes depending on the context. As Stefanie Houwaart describes in her article, patient involvement can be seen as progressing through several stages:
- Compliance: Patients participate by enrolling in studies and following procedures but do not influence decisions. This is often considered minimal or non-engagement.
- Consultation: Patients are asked for feedback—e.g., via surveys or focus groups. Their views may inform decisions, but their influence depends on how seriously their input is taken.
- Cooperation and Co-Learning: Patients actively collaborate with researchers, for example by helping design study materials or contributing to protocol development.
- Co-Learning: Patients are equal partners, often sitting on advisory boards, helping set research agendas, and offering the collective insights of their communities.
These levels are not hierarchical goals—not every project requires full co-leadership. Rather, engagement should be fit-for-purpose, reflecting the needs of the project and capacities of all involved. Importantly, different stakeholders within a single project may engage at different levels.
Principles for Meaningful Engagement
From practical experience, several key principles emerge:
- Engagement is a process, not a checkbox. It should be planned, maintained, and continuously reflected upon.
- Attitude matters. Successful engagement depends on recognizing patients as holders of valuable experiential knowledge—not just as subjects, but as experts in their own right.
- Mutual learning is essential. Patients need support to understand the research system. Researchers, in turn, must learn to appreciate the patient perspective—something rarely taught in scientific training.
- Relationships come first. Reaching out early to patient organizations—even before a concrete project exists—helps build trust and collaboration.
Training and Capacity Building
Both patients and researchers benefit from structured training. In some countries like Sweden, patient advocates complete formal education in healthcare systems and research. Similarly, scientists are encouraged to take part in training on patient participation, especially if their background is purely in lab-based or biomedical sciences.
Interdisciplinary collaboration is crucial for understanding the social, emotional, and systemic dimensions of patient involvement.
Practical Steps for Researchers and Biobankers
If you’re just starting out with patient engagement, consider these steps:
- Do your homework: Review literature and case studies on patient participation in your research area. Learn from others’ successes and challenges.
- Contact patient organizations early: Build connections before submitting grant applications. This lays the groundwork for authentic collaboration.
- Involve patients from the beginning: Include them in identifying research questions and designing protocols—not just reviewing documents later.
- Ensure fair compensation: Participation requires time and effort. Budget for reimbursements and, if possible, create mechanisms to free participants from work commitments.
- Document and share: Make your engagement process visible—through publications, grey literature, and communication tailored for lay audiences.
Structural and Cultural Challenges
Despite increasing institutional support, several barriers remain:
- Funding structures are often not designed to support patient engagement, especially in proposal development.
- Diversity and accessibility are ongoing concerns. Engagement should not be limited to retired or highly educated individuals—it must include a broad representation of voices, including young people, working individuals, and marginalized groups.
- Digital engagement is increasingly relevant, particularly for younger and more tech-savvy patients. Online platforms and virtual communities are vital spaces for participation.
Why It Matters
Engaging patients isn’t just a trend—it’s a path toward better, more relevant, and more democratic science. For biobanking, where trust, consent, and long-term public support are critical, patient engagement helps ensure that collections serve real needs and reflect public values.
Ultimately, successful engagement means sharing power, recognizing diverse forms of knowledge, and building long-term relationships. It’s a journey that demands effort from both researchers and patients, but one that leads to stronger, more ethical, and more impactful research.
